Did anyone regret the surgery they had?

Every time they squash all my lumpectomy scar tissue into a mammogram and put me in sheer agony, I regret not getting a mastectomy. But then again, they probably make that suck as well.

I had a lumpectomy a little over 2 years ago, was pushed into it by the doctors, and I severely regretted it for a very long time. I was also severely angry and scared for a very long time. Funny, Covid19 is actually what has helped me start moving forward, even just a little bit. Now I have a whole new scenario to worry about every day!

I didn't believe anybody when they said "it gets better with time". I was angry when they said it to me. I was hurt because it seemed nobody understood (or cared) how much pain I was in (physically or mentally).

I'm just over 2 years from my diagnosis, and I'm just slightly less angry, less scared, less regretful, etc. There's even a day or two here and there where it doesn't consume my every waking moment and all of my nightmares too.

I'm sorry you're going through this, I do know how you feel, and I wish I had a magic wand to make this easier for you and everyone else in this sucky-ass situation.

But.....even though it doesn't seem like it right now, this will get easier in some ways. But it takes a LONG time. Feel free to reach out if you want to talk, or vent, or cry, or anything that will help you process and heal.

I felt like I had a lot of people pressuring me to "just get them off" as one friend said, but upon researching and seeing what mastectomy surgery could be like, I was grateful to qualify for the lumpectomy. My recovery was not easy but compared to what I have seen friends go through, it was not too bad. I am thankful every day that I made this choice, I am very happy.

There is a woman in my Livestrong group at the Y who had a double mastectomy 5 years ago and she lives with constant pain. I'm not saying this is everyone, but a mastectomy is a much more invasive surgery and carries greater risks as such.

Cm2020---i don't know. I am going to ask my surgeon, at next follow up, if there is any way to get a lidocaine injection into the area prior to mammogram. I would happily pay for that. Last time the radiologist flippantly suggested Advil, which annoyed me...I was thinking, honey, that's not going to help. I think that's part of the problem. They don't understand the level of pain we can be in. It's NOT like a regular mammogram. I can say that because my non cancer side is fine getting imaged. Last time, my cancer side hurt so bad I almost passed out and they had to give me a break before getting the last film.

There HAS to be a better way.....

It seems that we are not orchestrators of how this plays out-like you, the covid precedes everything, and I pray that my surgery goes as scheduled. I swore I'd have a BMX, and here we are. I believe there's a reason, and that we will be alright. The NOT knowing-THAT is the tricky part, and for me where faith comes in. i have a choice-to go through the day ringing my hands, with what ifs and anxiety, or almost pretending "it" is not there, and making the best of my day with my family.

I am so sorry that you are struggling. Please do something kind for YOU today. Me? it's tennis in the chilly sunshine, and some cleaning lol. Reach out to me anytime, k?

(((hugs)))

xx

I am speaking with surgeon next Thursday. My plan for DCIS high grade-left breast-non invasive is a bilateral mastectomy. I am comfortable with my decision and it seems that after speaking with the oncologist and the nurse navigator, this is a reasonable choice. I was concerned it was "too much" for a stage 0 and my team has been sure to tell me that the best choice of treatment for me is what will allow me to sleep at night. I don't want to wait for the "other shoe to drop" as to say. I realize that even with that, there is a chance the cancer can return, but I will not have to do radiation, chemo, etc. barring any negative reports from surgical tissue which could state otherwise. I'm scheduled to talk to genetics tomorrow and the results of that will determine if I'll need ovary removal later on as my cells are both estrogen and progesterone positive (90%). I am menopausal (no period since December 2018). The hot flashes are MURDEROUS. I used a estro/proges patch for 9 months and, of course, had to come off of that with the diagnosis. I am anxious about my surgery (hoping to schedule week of May 11) and the limitations mostly as I am really active and stay busy. This covid-19 is awful. I am prayerful that I will be able to have the surgery and am not delayed. Oncologist wants me on tamoxifen if surgery is delayed past end of May.

I am sorry that you are regretting this decision. It isn't any fun to have a team that is not supportive of your desires and concerns.

When I was diagnosed in January, I was leaning toward requesting a bilateral mastectomy. I learned of my breast cancer 3 days before my scheduled visit to MD Andderson for a second opinion on my diagnosis of Boderline Ovarian Tumor (a rare form of ovarian cancer treated primarily through surgery). I had two robotic surgeries last fall- a complete hysterectomy and cancer staging. I was blown away by all of this!

To my surprise, the oncological gynecologist at MD Anderson advised me to seriously consider the lumpectomy option. While breast cancer is not her primary focus, she felt that my long term outcome of lumpectomy/radiation was just as good as the mastectomy.

When I returned home, I had the opportunity to spend time with the radiologist who performed my biopsy. She advised me that she also recommended the lumpectomy option. From her perspective, all indications are that properly performed lumpectomy followed by the radiation protocol reduces recurrence risk to that of bilateral mastectomy. Should there be a recurrance or a new cancer, she feels that research is indicating that it can be detected earlier if there is still tissue left to mammogram. I don't know if she's right but it makes sense.

My breast surgeon also recommended the lumpectomy so that became my choice. Then there was some drama when another mass was detected on MRI. The biopsy show that to be benign but "suspicious" so the planned surgery became a double lumpectomy. Recognizing the amount of disfiguration that would result, we proactively added oncoplasty so I also had a reduction/lift. This allowed the breast surgeon to be more generous with her margins.

Surgery and recovery during a pandemic are not ideal. My preparation was non-existent and follow-up care has not been normal. I'm having more discomfort because the plastic surgeon did not see me until over 2 weeks post-op to resolve a minor issue. I now have some stitch threads protruding that are uncomfortable but can't be dealt with for another two weeks due to appointment restrictions. I'm not at all happy that my team is adamant that I get my radiation started as soon as the plastic surgeon clears me - I was hoping to get a few weeks of feeling OK. Breast cancer is not anything that any of us ever wanted to have.

I believe that I made the right choice for me.

I had my lumpectomy (left side and 2 lymph nodes in the pit) 01/2018. All but the latest were very painful for the 6 month mammograms. I had one a couple of months ago and found the greatest tech by some miracle.

As for the radiation, I have a few regrets for not getting the mastectomy. I was really thinking about saving my career in the short term and not looking at the big picture. Don't get me wrong, no signs of anything so far. My lumpectomy was pretty good so I went right back to work (a few days later) with weight restrictions. It was kind of difficult for the first few days, but I made it. If I had had the mastectomy, my surgeon thought I might be out for a month. I also recall that the choice was mine, or rather, one wasn't any better choice than the other, based on my type of cancer.

So, if this had happened to me now, with this blessed pandemic, I would have opted for the mastectomy. Hindsight's a bi-ach.

I am upset, angry, resigned, upset.....that, as far as my treatment goes, I had so few choices and so little time to make them. No time for second opinions, genetic testing or anything. My surgeon was great. Hospitals were just starting to curtail what they were allowing and she said that she would be happy to find doctors for second opinions but she was afraid if I didn’t have a lumpectomy soon I might not be able to get one. She did not want me to have a mastectomy as I would have had to spend time in the hospital. My sister is an oncologist nurse and reassured me that this was the best thing to do considering the virus. She helped calm my fears. I’m doing the best I can, considering, and will do more testing and research after this virus has stopped wreaking havoc. 

I was stage 2A triple negative left breast. Could of gotten a lumpectomy but opted for bilateral mastectomy with nipple sparring. My surgeon tried to tell me cancer doesn't move left to right but I went with my gut and not take the chance to find out. The chemo was hell. I had the red kind and I knew I never wanted to go through that again so I opted to get rid of both. I had friends who just did the lumpectomy and years later they had cancer in the other breast. Does not happen to everyone. One of my friends had the Braca gene and I did not. Braca or no Braca I wanted the breast tissue gone. I have implants now with fat transfer and still have my nipples. Only one regained sensitivity because my right breast gotten an infection on a drive I took down south when I should of stayed in bed. But the jury is still out on my surgeon because twice my TE expander leaked and he had to remove it so could be his fault. So one breast is thinner due to that issue with TE expander. So my plastic surgeon is suggesting the DIEP flap to thicken the skin on that breast but Im scared to do that and have a huge tumny tuck scar and lose my nipples. I may just let my nipples droop. lol On the bright side my period just returned and I wanted to cry when I felt that sense of normalcy return. I do not miss hot flashes, HATED IT, good riddance. Hope this helps you and hope you can get your surgery and this pandemic subsides.

Hi there,

I would say don't torture yourself.

You can have limited surgery now, continue with your treatment plan, and have more surgery later. It's hard to know in advance how you are going to feel about an important decision like this. Be kind to yourself, and patient. The pandemic is what it is, but your call is not irreversible. You can go back and have more surgery down the road, and many of us did that. Having second thoughts and revert course is not unusual in this journey.

I had unilateral mastectomy, which at the moment sounded like the best decision, then changed my mind after the surgery results, and had a second mastectomy six months later. That one was also the best decision at that moment. I don't regret either decision.

Best,

LaughingGull

cm2020 Sorry you couldn't do your preferred surgery. It is nice to know that the option is still there. I learn something new here everyday!

I am over the 2 yr. mark and yes there are days I wish they were gone--however at the time it was explained to me that lump + rads = same as mastectomy. Also my only other option was only to have just 1 breast removed. My right side had only been diagnosed as fibroadenoma before the surgery. I had an excisional biopsy on the right during my lumpectomy which is when they found the LCIS. My left breast is significantly smaller than the right but it really doesn't bother me much at all. I have experienced like talbrig13 some scar tissue. I was unaware of these post surgical changes that can occur even months and years later. I had a seroma form post op, did not have to have it drained, and it did not delay my radiation. That breast is beat up and distorted and I just had a biopsy in late January this year and have fat necrosis and giant cell reaction or something. I get high anxiety around imaging time. I sometimes feel like a school kid trying to get a passing grade on a test! Thankfully I am fine and not due for mammogram until September. Looking forward to graduating to annual screening someday, being without cancer, and fear of imaging. Hang in there. Best wishes to you.